Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/

Two big things to write about today, one lovely and one less than lovely. I've started radiotherapy, now on day 5 of 20 sessions, and this isn't the good thing, in fact I hate it. Everyone had led me to believe that after going through chemo, radiotherapy seems like a complete walk in the park, but not in my case. I'd also been led to believe that you turn up, haul yourself up on the table, bish bash bosh and it's all over in about 2 minutes, so you get dressed and go home. Why is my life never that simple? In my case, because I had cancer on both sides, and because I also had a fairly major spread to the lymph nodes, they want to zap me to within an inch of my coping ability. Every day I take up a triple appointment slot, and have to hold myself stock still whilst half naked for nearly 40 minutes. Boring, and I'm not good with boredom at all.

I turn up to the reception desk in the most futuristic, state of the art beautiful part of the hospital, and book myself in. Every day they very nicely tell me off for not bringing my appointment card, and every day I still forget, and it doesn't count that I know my six-digit hospital number off by heart as well as my birthday and address and name. Then I sit, nearly always with the ever-supportive WM by my side, on really swanky armchairs, trendily placed around equally swanky coffee tables. They are pretty good, and don't keep me waiting long, apart from Friday when the snow came down heavily and they rang everyone and got us all to turn up at the same time in the morning.

When my name gets called, I'm assigned one of many very clean, bright broom-cupboard changing-rooms along the corridor, and this is when everything starts to go downhill. I strip to the waist, and put on a purple hospital gown tying up at the back, except it doesn't really. The ties are in completely the wrong places, and as anyone who has had major armpit surgery knows, trying to catch the ties on the back of the gown is nigh on impossible. Even on the days that by some fluke both the ties manage to find their way into the palms of my hands, modesty is still somewhat hard to maintain because your whole back is on display and the gown loves to slip off your shoulders. Even if it doesn't, without my fake boob in place anymore, once I take my seat again suitably gowned up it's pretty apparent to all and sundry that I'm a boob short of a pair.

Then they call me in. The room is huge, with the most difficult bed in the world to climb up onto. There is a funny knee-shaped foam-cushion to keep your legs in place just past the middle on one end, and the other end is in a sit-up position. So there is this tiny patch of bed, about 8 inches long, that you have to aim for in your ascension. Factor in that I never quite reached five foot (150cms if you don't think in "old money") and that the bed is incredibly high, plus I'm still very weak and breathless, and the fact that I ever get up there at all is quite amazing. All this struggle watched by sometimes 4 radiographers means that I feel stupid, vulnerable and back-footed before the session even gets started. It wasn't until yesterday, day four, that I happened to notice that there was a step in the corner especially for people like me, and asked to use it. Impossible Everest converted to a small flight of stairs in one easy move, but probably far less entertaining for my audience.

Once on the bed, I somehow have to hoke my legs over the knee cushion, place my head on a funny little plastic ring-doughnut that becomes very uncomfortable over the next 40 minutes, and then take my arms out of the hospital gown. Even more entertaining when I've already positioned myself before I remember it was that odd occasion where I actually managed to tie a knot behind myself. Taking my arms out of the hospital gown is a moment of complete vulnerability, knowing that complete strangers are now looking at my shark-bite disfigurement, but worse is to come.

They have specially designed arm-stirrups to hold your elbows and wrists in a most unnatural position way above your head, again very difficult and uncomfortable if you've had armpit surgery on both sides, like me. So I lie there, exposed and stretched out and completely immobile, like I'm on some sort of medieval torture table.

This is when they really start to have some fun. Out come their rulers and their pens - red, black and blue ones. One person on each side of me, using my upper body to draw things on and to say strange things about to each other. "I make it 98.2", "correct" "4 centimetres to the left" "OK". You know that sarcastic phrase "I'm talking about you, not to you"? Well, that's just about how it feels. This whole technical drawing lesson goes on for about 10 minutes, while they are trying to ensure that their magic laser beams go into the exact location. It also means that they move me, both by moving the table, up, down, left, right, rotational both ways, tilting too - but because they are talking to each other rather than me I don't know that I'm being moved until it happens, and it is rather pleasant really, like being on an old-lady white knuckle ride, or maybe like eating magic mushrooms - quite surreal and other-worldly. If the bed moving doesn't quite hit the right spot, they shove me around manually, but because they are only aiming for a millimetre of difference, I have to play dead and not help them.

By the time they are ready to leave the room, the worst things have happened - by now I have normally developed about 15 really itchy spots, or I'm now dying to go to the loo, or even worse, my chemo-runny-nose has decided to really show off how clever it is at spilling its' mucousy contents all over my lower face. My chin has been tilted skyward, so my field of vision is severely limited, but I am aware that the bed is gently dancing again, and that various bits of high-tech gizmos are circling above me. Sometimes the lights are on, sometimes they are off, but at least in my favourite of the three rooms I've had this torture so far, they have pretty good old lady piped music - Harry Secombe sang "If I ruled the world" especially for me yesterday, and today I had Tom Jones all to myself. Half naked with Tom Jones in the room and I'm whingeing?

Every now and again they pop back, draw more lines on my chest, move me about a bit and leave. What is particularly disconcerting is when someone new comes in at this stage and I can't even see their face. If you have to take your kit off for people it's nice to know who exactly has seen your wares.

Eventually it's over. Except that my arms have by now frozen into position and I never think I'll ever move them again, and it takes several minutes for feeling and movement ability to return, before I can start to work out how to sit up and get off the table. Then back through the waiting area to find my broom-cupboard, and home again in a slightly worse mood. Today though, clever WM knew exactly what to do - lunch and a mint hot chocolate in my favourite cafe!

Now to the fun stuff. We're getting a dog! Yes, I know I'm crazy. Yes, I know it's the wrong time, we've never had a dog before, I've got no resources left and I'm not well enough at all, but to heck with it we're getting one. For the past few weeks this dog was a concept, a virtual dog, but now it's become totally real. His name is Steve, he is six weeks old, a cross between a Labrador and a Staffie, and jet black. He is one of a litter of 10, all equally gorgeous, from a lovely family a couple of miles up the road. We chose him on Sunday, but he's not old enough to leave his mum quite yet, so we have a chance to buy all his bits and pieces and get our heads around it.

Actually it's not my dog at all, it's going to be for my gorgeous 15 year old son. He's the one who named him, and he's the one who had the terrible task of choosing which one of the 10 to reserve. Steve is hardly a conventional name for a dog, and we have suggested all sorts of other names, but no, he wants a completely un-dog-like name, and Steve is non-negotiable. An unconventional dog for an unconventional family - perfect!

I'm now tattooed with 4 tiny dots, one on my neck on in the middle of my chest, and the other two on the outer edges of my chest. It wasn't the best half hour of my life, and it was a fairly impersonal procedure as I guessed it would be, but strangely, afterwards I was ever so slightly euphoric. This tattooing event had been on the outer edges of my worry radar for over 6 months, working it's way towards a major anxiety moment as the date got closer and closer. Now it's over, I can tick that box and move on, and I do feel just a tiny little bit proud of myself for having got past it.

The tattoos are strategically placed so that the radiotherapy beams are aimed at exactly the right places, and to ensure that my heart stays safe and well away from the rays. I had to have 3 CT scans first, and they taped very thin wires over all my scars beforehand. I also had to put my arms in stirrups above my head - why is it that my face always develops irritating little itches as soon as I'm not allowed to scratch them?

The best bit was the hot chocolate and cake afterwards with WM, as I knew it would be.

This week, just as I thought I was going to be emerging from chemo boot-camp, filled with energy and motivation to really get things done, another set of symptoms have loomed their ugly little heads, knocking me for six in the process.

For some reason, my muscles have absolutely no strength whatsoever, and they seem to be getting worse. The effort of going upstairs, or even getting dressed is so arduous that I'm puffing and panting for ages until I get my breath back. I can't walk more than 10 or 12 paces before I'm behaving like I've just run half a marathon, and it's all absolutely crippling, as well as being really annoying.

I'm fine sitting down, which luckily I'm really skilled at, but any movement at all finishes me off. My big worry is that it's some sort of side effect from Herceptin. That might mean that they take me off it, which would be really scary. Herceptin has been available in the UK only since 2006, and it is already responsible for increasing my type of breast cancer survival rate by 40%, so I do feel like it's my insurance policy. I'm due for my third dose tomorrow, and I'll be seeing the Oncologist beforehand, so I can tell them about it then and see what they think it might be. An even worse scenario would be that it's a sign of the cancer getting worse and spreading, but I'm trying not to even go there with my thoughts. I'm pretty sure that, whatever it is, I'll be scheduled up to the eyeballs with a thousand more test and investigations, when all I really want to do is catch up with some living normally after all those months of surgery and chemo, but it looks like that will just have to wait.

One thing that really can't wait any longer is a new laptop. This one is now well beyond its sell-by date, and the final straw was a lovely glass of red wine being tipped all over it at Christmas. It took several days before it would turn on, and at first, it was obviously still very tipsy, with all the keys typing the wrong letters. It's now virtually recovered, apart from the letter "D", which just will not function at all, so the only way I can write anything is to use the online keyboard every time I need a "D", which is painfully slow and very annoying. It's not just the glass of wine that's finished it off - it's getting slower and slower and very eccentric. Just like me, really, though I'm not yet at the stage that I need a week to recover from a glass of wine.

Anyhow, I got all excited about the new generation of laptops, with Windows 8 and it's new capacity for touchscreen operation, coupled with the new convertible range that all the manufacturers are launching. Basically they now make laptops that convert into tablets, with all sorts of mechanisms whereby the keyboard folds under itself to be a stand, or even one which has two screens, so someone on the other side of the table can follow what you're doing. Maybe a mixed blessing, but I think this feature can be turned on and off, so you can still keep your secrets. Anyway, I was so excited by the prospect of buying one, until I saw the prices. They cost 2 to 3 times as much, so I'll just have to wait until everyone else has one, and they don't cost an arm and a leg anymore.

Unless........I can find a way to afford it that doesn't entail starvation, because, let's face it, I've already done a stack of waiting, and all this cancer waiting certainly teaches you that sometimes life is just too short.

Today I have what they euphemistically call my "Radiation Planning Meeting". It sounds so cosy and civilised, doesn't it? Please don't be taken in my it. We won't be sitting around a big table in a nice modern conference room, chatting about planning until they wheel in the coffee and biscuits after 45 minutes. Oh no chance. This is cancer treatment, there's very little that's nice about it. Looks like I'll be stripped down to the waist like a huge lump of meat, then strapped onto a table which will then propel my body towards some futuristic green lights, and then it will be "ouch" "ouch" and "OUCH" several times while they make tattoo marks on my chest so that once radiotherapy gets underway in a couple of weeks, they have target practice marks so they know where to aim the rays. Hello, I'm needle-phobic? Does cancer care? Oh no, it loves to have a laugh at my expense. Frightened to death? Absolutely, I am. The whole procedure sounds so clinically impersonal and inhumane. WM doesn't know it yet, but he will be whisking me off straight afterwards for a mint hot chocolate and a very comfort-food cake, or maybe even several. That is, if I survive the next couple of hours. Wish me luck!

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About Me

I've passed my expected "sell by date" of the prognosis I was given when they found out my cancer had spread & loving every minute of it. Knowing that time may be short has been the catalyst to try & make the world a better place for the next generation of families like mine, those who have disabled children. I wrote a book, "The Special Parent's Handbook", telling it exactly how it is. It has become an Amazon #1 Best Seller, & due to the impact that the book has made I was named by the HSJ as being a "Top 50 Inspirational Women in Healthcare 2014". I'm now writing on healthcare topics, speaking at conferences & seminars & through my series of innovative workshops for parents and staff, people are developing better solutions for some of the issues we face. It's all about getting everyone to work together in partnership, to help every child reach their potential. But it's about a lot more than that too. Its about kindness, compassion, listening to each other, collaborating instead of competing, & putting people at the heart of all decisions. To find out more, please visit my website http://yvonnenewbold.com/ or email me on yvonne@yvonnnenewbold.com. Thank you.